The government’s frantic approach to special education threatens vital provision for thousands of children like mine

The government bounces from crisis to imbroglio and back again – but at Michael Gove’s Department for Education, the revolution rolls on. A green paper on special educational needs was published last year – and after the inclusion of the plans in the Queen’s speech, last week saw an explosion of news coverage. As many as 450,000 children, said ministers, could soon be taken out of the category of special needs altogether. The resulting stories paid no mind to the idea that we are talking about a sliding scale, and the infinite complexities of child development – as far too many people saw it, you either have special needs or you don’t, and too many people are playing the system. “Schools on a scam and an excuse for lazy teaching” was one of the more sensitive headlines on Mail Online.

None of which is to suggest that the way things are done isn’t in need of change, or that some in government don’t have a keen understanding of the mess special needs provision is in. Everybody seems to know someone who has been through the special needs grinder (if you have experience yourself, please get in touch at the email address below). It is a deeply malfunctioning system, in which the obligation in law to make decisions solely based on a child’s needs eternally bumps up against limited council budgets, but no one is allowed to say so. As a result, good people serve messed-up imperatives – and, more importantly, thousands of families are denied most of the help they need. As so often happens, the machine often can only be satisfactorily played by the sharp-elbowed, so class is a constant subtext.

I speak from experience. One of my children is autistic. He was diagnosed just after his third birthday. In our innocence, my partner and I had some vague sense that the public sector would provide, not least because the most common theme in any introductory text about autism is the need for early intervention. But no: it quickly became clear that NHS speech therapy was effectively nonexistent, no one mentioned my son’s obvious problems with motor skills, and too often we were effectively told to go away, depend on threadbare arrangements and wait till he was eligible for school. Looking back, I’m not sure how we did it, but we read up on a research-proven technique called applied behaviour analysis (ABA), found an independent consultant, and set up a three-days-a-week home programme. My son’s use of language hugely improved. He learned many of the other crucial skills that were either lacking, or absent: the ability to point, and imitate; the habit of commenting on his surroundings; how to divert his energy away from tantrums into productive activity.

The next step was to approach our local authority with a view to what’s called a statutory assessment, so my son’s needs could be officially analysed, and we could make the case for public funding of the programme, enshrined in a legally enforceable statement of special educational needs. We knew what was required: in cases like ours, to stand any chance of meaningful success, you need a truckload of informational wherewithal, the will to fight, and the money to hire a good lawyer – which, at a stroke, scythes out millions of parents, who are left with only piecemeal help, and hotchpotch provision.

To start with, despite my son’s diagnosis, the local authority did what a lot of local authorities do, and refused to assess him, on the most specious of grounds. We then appealed via the official tribunal system, and endured grim months of compiling reports and writing a lengthy case statement. And then, one morning, mere weeks before our hearing, my mobile phone rang, and I spoke to someone from the local authority I had never dealt with before. Rather than obstinacy, we were suddenly met with a guarded kind of openness. We were granted assessment, and then a statement – and after long months of grinding negotiation, my son’s programme was introduced into his brilliantly co-operative state primary school just as he started there in September 2011. The arrangements seem to be working well: last week, while getting changed for school, he turned round to me, beamed, and told me for the first time about all the classmates he would be seeing that day.

Inside two years, the government’s new system will be in place, which will change arrangements that lie at the heart of lives like ours. Statements, which can hold councils to detailed commitments to particular children, are to be replaced by single plans covering education, health and social care between birth and the age of 25 – but there are clear signs that they will not be as dependable as what they will replace. There are plans to introduce personal budgets, but no real sense of what benefits they will bring to families who already juggle huge responsibilities, or whatgenuine innovations – if any – they will involve(therapies such as ABA appear to be off-limits). Late last week I spent two days on the phone, talking to people involved in special needs charities and pressure groups. It’s fair to say that no one had any real clue about what might be coming.

The government has announced 20 “pathfinder” projects, to pilot some of their plans. Freedom of information requests made by one education activist in late March eventually highlighted the fact that,as against the official claim that the authorities involved “are testing” their plans, at least a third had not yet decided which families should be included; one council insider I spoke to last week said the government had issues of “credibility” in “moving so fast”; even such apparently up-to-speed authorities as Gateshead and East Sussex will not have their schemes in place until September. But a draft bill will be published in the summer, the government says its interim evaluation of the pilots is set to be published “in the autumn”, and the plans proper are meant to be in place “for 2014″. There are reportedly rumblings on Facebook from families who wonder why they’re bothering taking part, and an increasingly familiar coalition odour hangs over the whole enterprise. Is all this a sign of ineptitude, or cynicism? Or both?

Meanwhile, massive fundamental issues remain, and it looks as if the government’s plans will barely touch them. Autism is my specialism, and I well know that our health and education systems exist in a state of collective denial about the necessity of concerted early intervention. A survey this year by the National Autistic Society found that 34% of its respondents had had to wait three years or more for a diagnosis after first raising concerns: precious time, often completely wasted. Without powerful forces that will pro-actively hold public institutions to their obligations – something singularly lacking from what’s now proposed – legal argy-bargy is set to remain the most reliable means of getting children what they need, and is often just as time-consuming. In any case, for thousands of people it’s simply not an option. At a huge cost, we later pick up a bill for a mountain of missed opportunities, which is why even people mindful of the need to control public spending should favour early intervention, and a means of making sure it happens. The arguments are obvious: in the absence of essential life skills, too many autistic life-paths unnecessarily end with round-the-clock institutional care, mental health problems – even prison.

What, we should also wonder, of those 450,000 cases now said to be in the government’s cross-hairs, and the fact that even if a “need” is nuanced and perhaps temporary, it may still be very real? Reforming zeal and raging stories in the press are no substitute for careful analysis and even more careful action. Looking at the current proposals, and mounting concerns about them, I’m rather reminded of cliched advice always thrown at parents with worries about a child: if you suspect something isn’t right, then it is no good assuming that everything will somehow turn out OK – you must act, and fast.